I just looked at this for the first time in many years, having dug it out for a friend, and what a trip down (traumatic) memory lane. In February of 2002, Ben was eight, and this was the first thing I published, or simply wrote, about autism and us (it actually ran twice, the first time in Parents Magazine in a truncated version, and then after the rights reverted back to me a few months later, in full by the Chicago Reader — double duty!). Reading it fourteen years later gave me a bit of a chill, and made me realize just how far Ben has come – and how much HAPPIER he is these days. Now 22, he was eight at the time, more than four years years before he moved into his (first) residential placement.
(“Eesinnuh” is my original title. Parents Magazine changed it to, “What It’s Really Like to Raise a Child with Autism,” while the Chicago Reader and the Reader’s Guide called it, “More Than a Handful.” I still call it “Eesinnuh.”)
I’m posting it below. It is also at on the main website (a.k.a. my electronic filing cabinet: Click to read it there.)
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EESINUH
by David Royko
“Eesinnuh, eesinnuh.”
It’s enough?
“Eesinnuh, eesinnuh.”
It’s a nut?
“Eesinnuh, eesinnuh.”
Eats enough?
“Eesinnuh, eesinnuh.”
It’s a knot?
“Eesinnuh, eesinnuh.”
My mind flashes to Citizen Kane and “Rosebud.” I find myself imagining Ben, decades from now, an old man on his deathbed, uttering his last thoughts to someone who has no more of an idea what he means than I do today. “Eesinnuh, eesinnuh.”
Or maybe he’ll say “Wyet (pause) Errrr.” We know that one’s not Wyatt Earp, nor quiet earth. Sometimes with Ben it seems like we know more things that are not than things that are. In that, we have much in common with the scientists. In some ways that’s a good thing. At least they know now that autism, or Pervasive Developmental Disorder, or whatever term you choose, is not a psychological disorder brought on by bad parenting. Bruno Bettelheim didn’t know that a half-century ago, or chose not to entertain that idea. Instead, with the certainty of a medieval barber-surgeon promoting bloodletting to cure all ills, he brought torturous blame down upon the heads of parents already locked in an emotional chamber of horrors. We now know that autism is a devastating disorder of neurology, not of psychology, at least for those afflicted directly. The psychological problems tend to come to those who love them.
But at least there is direct eye contact, something that took plenty of work and training and practice, and something that we almost take for granted now, even if we once thought eye-to-eye contact with Ben might never become routine. And Ben’s in a good mood, and is beaming his smile in his radiant way that brings to mind his mother’s comment that when he is happy, he is the most delightful little guy, but when he is unhappy, he is the most distressing person imaginable. She is right, except for the “little guy” part.
Ben is five feet tall, 150 pounds, wears a men’s size eight doublewide shoe, and is eight years old. He is not a little guy, unfortunately. If he were, he would be easier to control, at least physically. Steinbeck’s “Lenny” shared the same problem of size. We will never have rabbits for pets in our house. I am the parent genetically responsible for his size, weighing in at three hundred plus pounds and standing six feet six inches tall, and even if I can still control him better than his 5’4” mother, my limits are too often tested, too often exposed. Like when we are taking a walk.
“Taking a walk” is actually one of Ben’s phrases that is easily understood, even if it is often belted out for no “good” reason (like during a bath). We revel in all of Ben’s words, because there was a time we didn’t hear any. On this particular Saturday afternoon, however, the phrase described what we were doing. Then again, it doesn’t really begin to describe what we were doing.
This had been a nice day. Ben’s OT (Occupational Therapist) had called to cancel his standing appointment, which meant we were completely without any scheduled activities for Ben that day, which can be a challenge. But the weather was nice for a winter day in Chicago, and Ben always loves the train. We climbed into the van and headed for the Linden stop at the end of the Evanston “L” line.
The trip to Howard Street and back on the train had filled Ben with joy, as usual. The highlight, for me at least, was when Ben startled the other riders by excitedly and abruptly yelling “Now watch Mr. Bunny!!!” That particular war whoop comes from one of the many videos of Ben’s that have “crossed over,” which means he used to love it and watch it incessantly until, one day, he became absolutely, profoundly terrified of it. But even if he no longer can watch it, he still loves to quote it. Loudly.
When the ride ended, we headed for the car. Driving north on Sheridan Road through Winnetka, one of the wealthiest suburbs in the country, full of lavish estates and imposing old mansions, I passed a small playground that was planted near the Lake Michigan shore, and the unseasonably warm January weather, along with the fact that it was still six hours before Ben’s bedtime, made me double back to the picturesque scene of monkey bars and moms and dads playing with their kids. Ben was happy to hop out of the van and get moving along the equipment. “Hah!” I thought. “His OT is free today.”
One of the benefits of this park is the unbroken fence that runs along the top of the bluff, making it impossible for Ben to try to climb his way down to the beach. Walks along the beach can be nice, but Ben inevitably wants to go much further along than is possible, happy to try and climb over a rusty sea wall, head up onto beachfront private property, or–especially fun to him–wade out into the freezing water fully clothed to try and get around a barrier. I was not in the mood for that brand of fun.
Ben was. Finished with the jungle gym, it was time to try to get to that water. Moving along the length of the fence, Ben hit the north end, which joined with a high wooden privacy fence separating the park from the mansion next to it. Actually, for Ben to hit the north end, he first had to crawl through some thick bushes in the corner of the park, which he did, but with me acting only as an observer who hoped he wouldn’t emerge in need of tweezers.
But he hadn’t given up yet. It was now time to walk along the privacy fence, and I expected that once we hit the sidewalk along Sheridan, he would want to go around the end of the fence and head back to the water on the private property, and I was ready to do battle. To my happy surprise, once he reached the sidewalk, he turned to the left, and started walking along the sidewalk, southbound.
I thought at first that we were now just going for a walk, and maybe we were, though later I realized that he might have thought that somehow the sidewalk would eventually lead to the water. But at that moment, I said to Ben, “Oh, OK, we are Taking A Walk.” I was relieved to have dodged a bullet and avoided a scene. And we both needed the exercise.
We walked. And walked. After going well beyond what I thought was wise, I said “OK Ben, time to go back to the car.” He pushed ahead, deep into the perseverative walking that can mean trouble. If he were small, or still 4 years old, I could have swooped him up onto my shoulders and that would have been that.
I set my sights on the bend in the sidewalk where Winnetka ends and Kenilworth begins, hoping Ben will somehow see the slight change of direction as a good place to turn back. He doesn’t, and we don’t. I become more concerned and more adamant, finally turning back myself and saying, “OK Ben, I’m going back now. Bye bye.” Luckily, he turns back, reluctantly.
My good mood restored, we are about three minutes into our long walk back when the walk, the day, the weekend itself shifts. The tantrum begins.
Tantrum is a word most people associate with children, yet somehow it doesn’t really do justice to the experience of Ben when he is in this frightening state. Some behavioral specialists use the term “Behavioral Seizure,” which, in its clinical cleanliness, also misses the mark. I have yet to come up with a term that hits the mark. It just might be one of those things where “ya hadda be there.” But you don’t want to be.
Imagine what life must be like when you have a desire, let alone a burning need, to “say” something, to communicate, and you can’t. Joy, pain, curiosity, frustration, hunger, affection, fear, fatigue—friends of Ben must become detectives and only then can we sleuth out these concerns, if we—and he—are lucky. Today, we are not so lucky.
Ben stops, does a standing bunny hop, screams, and hits himself with full force and with both hands twice in the sides of his head, bends forward at the waist, flings himself back up straight, screams a sobbing screech, smashes himself in the face with his left hand, and sobs loudly, all in the first 5 seconds. This is why I was worried. We went too far. I feel like the old man, the sidewalk is my sea, Ben is my marlin, and autism is our shark.
I grab his wrists and say “OK Ben, come on. We have to walk to the car. No hitting.” He screams. He shifts into dead weight and starts to crumple to the ground. Now he is on all fours on the sidewalk, slapping himself in the face.
“Come on Ben, we have to walk. Let’s get to the car and have a bottle.”
Yes, he’s eight, taller than his grandmother, outweighs his mother, and yes, he still drinks diluted apple juice out of a baby bottle. Is it our fault? Maybe. Some kids bite their nails, some adolescents smoke, and Ben still drinks a bottle. He loves it, it soothes him, and that’s the way it is. It is also handy for getting medication into him, since he is extremely defensive when it comes to ingesting all but a few foods and drinks.
And I am hoping the offer of a bottle will be my carrot on the stick today. Not today.
I bend down and lift him to his feet from behind, my arms under his. He stands, screams, jumps and flails, knocking my glasses askew and getting my nose hard enough to bring water to my eyes.
“Dammit Ben,” I reflexively blurt.
Shifting into the numb, task-oriented mode of focusing only on essentials, I stand next to but slightly behind Ben, a position that allows me to walk, hold him up, push him along, and keep hold of his wrists all at once. I am sweating, my back is aching, my ears are ringing (his voice is loud), and I don’t know if I can keep this up for another third of a mile. I do know that I don’t have much choice.
After another dozen steps, Ben tries to jump up and down before he goes back into dead weight, holding his arms up. He slides back to the ground, and he lays flat on his belly, bouncing his face onto the asphalt, screaming. We are blocking a driveway that leads into several lakefront estates, and I imagine a Lexus flying up the driveway and squashing us both. I only now notice the spectacle we are to the passing cars.
Sheridan Road is a narrow four-lane street with the sidewalk close to the road, separated by a thin slice of lawn, and cars are slowing down to see what’s happening—who is that huge guy with the mini-Hulk Hogan and what the hell are they doing? I notice that one car has turned around and come back, the driver staring. I wave faux-cheerily, simultaneously understanding their concern and wanting to flip them the bird and ask them if they’ve paid for their tickets. A couple of 40-something females jog by in their fashionable pink and yellow outfits, and they too are staring. “Autistic tantrums are the best,” I say. They say nothing.
Ben makes another little leap, loses his balance, and tumbles to the sidewalk, hard. I look in fear at his arm, which seemed to have taken the brunt of the fall, very worried that he might have broken it. Less than two years ago, Ben misjudged a step, fell, and broke his wrist. I am imagining a repeat, but he gets to his feet and starts to slap himself again, which suggests his arms, wrists and hands are fine. Relieved for a millisecond, I grab his wrists again to try to stop the self-beatings. I know he will have bruises on his face this week.
Now I am half-expecting a cop to pull up, which I would half-welcome. “You feel like serving and protecting? How about serving us a lift to our car and protecting us from the rest of this tantrum?”
But the cops don’t come, and Ben’s nose is bleeding, though not from inside, but from a scratch at the bottom of his right nostril, caught by one of his fingernails. His face is red and flushed but not wet, since for some odd reason, Ben never sheds tears. But his nose is running, he is hollering, and as I say “Bye bye, I’m going to the car,” he rises, only to bolt toward the street. I lurch and reach him before he gets to Sheridan, and he goes down again, trying to crawl across the strip of grass into the traffic, still slapping away at his face. This time, my attempt to lift him fails, with Ben limp on top but kicking from the bottom.
I am breathing heavily, having been a bit frightened when he ran for the street, and wondering why we can’t just have one nice, normal day where a trip to a playground can mean only a trip to the playground. I’m feeling sorry for Ben, because whatever he’s going through, it sure isn’t fun for him, and his Dad can’t do much to help. I now wonder if he thought that his walk along the sidewalk would bring him to the lake. I wonder if his stomach hurts. I wonder if he’s feeling worn out yet, like I am.
After more of the same, we finally reach the edge of the park and the van, and I discover one possible explanation for what was making him so miserable.
One of the little quirks that tend to differentiate those who have raised kids from those who haven’t is the comfort level when dealing with substances that come out of infant and toddler bodies. And one of the things that separate out many parents of special needs kids where “potty training” is an issue is the forced comfort those parents have with those substances year after year and in much larger quantities. A toddler is one thing. An eight year old toddler is quite another. And Ben could not have been comfortable walking with what he had to carry along with him in his very large diaper.
To be honest, the thought did occur to me earlier that gastrointestinal distress, or the end result, might have been what was causing the trouble, but I didn’t bother to check because what good would it have done to know? Since our “walk” was unplanned, I’d left the ever-present backpack of wipes, diapers, plastic bags, and a change of clothes in the van, and even if I’d had it with me, it wouldn’t have done much good on a sidewalk along Sheridan Road anyway. I could just imagine the faces of the drivers, or the cops, as they got an eyeful of that scene.
Though Ben didn’t stop yelping and hollering once we were in the van, at least he “assumed the position” to be stripped, cleaned, and redressed. I tried to hand him a bottle, but he pushed it away and said “Pig, pig!” He wanted his little pink rubber pig I’d put into my coat pocket when he began climbing the monkey bars prior to our walk. Had he wanted this all along? Who knows but Ben. He held the pig, and I went to work.
As I spent the ten minutes it took to take care of Ben’s business with sweat dripping down my nose, arms aching, and a little headache approaching, I felt both relief that it was over and fortunate because it could have been worse. As the saying goes, “Shit happens,” and in our family, with Ben’s various chronic disorders, it should read “Diarrhea happens,” as it was at that moment in the car, and with my wife the week before. But for me on this day, at least the mess was contained.
Karen had been driving Ben to an early evening therapy appointment. Ben’s twin, Jake, was along for the ride and the hour in the waiting room. Jake does not suffer from autism, but he does suffer his share of life events that come from living with autism. He also has a weak stomach for things that might be considered by most typical people as “disgusting.”
Jake was in the far back row of the minivan. Ben was in the middle row, and Karen was at the helm, with Zena, the family golden retriever, riding shotgun. Zena actually enjoys things that are disgusting. It’s a dog’s life indeed.
First they drive through McDonald’s for cheeseburgers and fries. Ben takes his cheeseburgers plain, in the extreme, which means nothing on it, including meat. “Just cheese and bread, that’s right, like a grilled cheese,” we have said to confused drive-through workers more times than we can count. “We don’t have grilled cheese.” “Right, OK, that’s why we want a cheeseburger, plain, with no meat.” Sometimes it is just easier to order a plain cheeseburger and remove the meat ourselves to toss to Zena, a solution she clearly favors.
As they merge onto the expressway, Jake yells to Karen, “Mom, Ben took off his seatbelt!” She looks back to see that Ben has not only removed his seatbelt, but all his clothes along with it, and he was sitting back in his seat and peeing all over the back of the front passenger seat.
She turns back to the road. This type of event, though certainly not desired, is nothing exceptional. At least it was only “number one.”
Karen glances back and sees that Ben is now standing up. She also sees that the number has been revised. Hey, diarrhea happens. All over the seat. And now, all over Ben’s hands, and another seat, and the floor.
Zena catches a whiff, her nose twitching in the air. She’s a great dog, but like most dogs, what she is willing, even glad, to ingest is enough to make anyone sick, except for us–we’ve seen worse. Still, the thought of Zena getting back there, and spreading the good cheer around even further with her paws… She makes her move, and Karen reacts just in time, grabbing her leash and keeping her up front.
Karen has not made a big fuss over any of this because, first, it doesn’t help, and second, better not to draw Jake’s attention to the festival of sights and smells. But now Jake, burger in hand, turns from the view outside to the one inside.
“Oh God, that’s the most disgusting thing I’ve ever seen!” Considering our household, he must have a short memory.
“I know, Jake.”
“Oh no, I’m gonna throw up!”
When Jake says that, he is not speaking figuratively. He means it.
Karen, imagining the scene shifting from black (or brown) and white to wide screen Technicolor, has now shifted from her usual Zen-like calm, her voice becoming firm and desperate and louder.
“Jake! Don’t throw up!”
“Then can I give my cheeseburger to Zena?!?” The sight, smell and feel of food aren’t appealing to Jake at the moment.
“Yes!”
Jake doesn’t hesitate, and the next thing Karen sees is a cheeseburger flying past her shoulder and landing in the front seat. Zena shifts her interest from the enticing smells behind her to the cheeseburger that has plopped at her side. As Zena gulps down the cheeseburger, Karen is thankful for any little favors that come her way.
Karen is thinking ahead. They still have a few more minutes on the expressway before getting to the office. Only then does she realize that Ben’s teacher forgot to send Ben’s backpack with him when he left school. Karen has no wipes, no clean underpants or diapers, and no clean clothes.
Then she feels the love pats. Ben has moved over and is patting her on the head, sharing the wealth with Karen, and her hair. Well, at least he’s in a good mood. So is Zena. And Jake hasn’t puked.
Pulling into the parking lot, Karen instructs Jake to go inside and tell Ben’s therapist, Carmen, what is happening, and to ask for some wet rags or paper towels or anything she has that might help. Carmen, who is still in a session, leaves momentarily to bring Karen a bucket of water and a roll of paper towels. Karen cleans Ben’s hands and finds a shirt of mine in the back of the van that was awaiting the dry cleaner’s, slipping it onto our barefooted boy. As they walk to the office, Karen is bent over, cleaning the bottom of Ben’s feet as they go so he doesn’t leave footprints on the waiting room carpet.
Carmen is a dedicated (crazy?) therapist, and once Ben is cleaned up as much as possible, she tells Karen that the session will go on. She doesn’t want Ben to get any ideas on how to avoid therapy on days he is not in the mood. That would never happen with Carmen anyway, since he loves his time with her, but the point is well taken. Ben happily prances into Carmen’s office as Karen dutifully marches back to the van to spend the therapy hour with soap, water, paper towels, and Zena.
That is how I can feel fortunate as I tend to Ben as he stands howling in the van. It can always be worse.
Once he is dressed and buckled in, I hand him a bottle, which he grabs and sucks in desperation as I pull out onto Sheridan. We’re going home. It’s over.
Sure it is.
When we get home, I notice than Ben is limping as we get out of the van. He can barely make it up the step and into the house. By bedtime, he can hardly walk. It looks like my relief at his not breaking his arm when he fell was hasty. I’m wondering now if he broke his leg.
I say to Ben, “Does something hurt?” He doesn’t say anything, and I say “Ouch, my…” and pause and he answers “…foot.” This is a huge leap from only a year earlier. He actually has communicated that his foot hurts. Great!
Great.
The next morning we call our doctor, who directs us to the ER for x-rays. After lining Jake up with activities for the day so he doesn’t have to spend his Sunday in the ER, we head out.
The ER is busy. We push Ben around in a wheelchair, which he enjoys. After an hour or so, it’s our turn. The doc first wants to x-ray Ben’s foot, ankle and leg. If those are OK, he’ll want an x-ray of Ben’s hip. Holding Ben down for x-rays is what it must be like to rope a calf. He doesn’t want to be lying down in a strange and darkened room, and he sure doesn’t want to hold his foot, leg, ankle, or any other body part at strange angles and remain perfectly still. The x-ray tech’s frustration shows, but not as much as Ben’s. Somehow, after many minutes and many more grunts and protestations and reassurances, we’re done. If we are lucky, we’ll have to do it all over again for his hip.
And we are lucky, and after going through a much easier time with the hip x-rays, we are set free to go home. Four and a half hours after we left, we are back, with all bones intact.
We head to the “big bed” for tickling and squeezing, two of Ben’s favorite activities with Daddy. He giggles, and then looks at me. The weekend is winding down.
“Eesinnuh, eesinnuh.”
It’s enough?
Is it ever.
***
February, 2002
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More about Ben and us and autism: